Hi,
My 18 month old son was just diagnosed with Myoclonic Epilepsy :confused: . He was also started on Phenobarbitol. I was just wondering if there was anyone out there that has heard of this or experienced it themselves. I wanted to know what to expect with it.

Thanks a lot for all your help

Paty

Hi! Im sorry to hear about your baby. I hate it when babies are involved. My son, 5 months, has partial epilepsy. I have myoclonic epilepsy along w/ petit-mal. My son is on phenobarbitol too, and it is working very well. I haven't noticed any seizures, but he could still be having them. He loses conciounious for about 15 secs. Every babies bodies react to phenobarbitol differently. I can tell you that w/ me having myoclonic epilepsy, I would have brief jerking in my arms. Make sure your baby gets plenty of sleep!!! Sleep deprivation caused my seizures to worsen. Good Luck to you! Just be a loving mother and give him extra love and patience. It will get better.

How long have you had the epilepsy? My son is already developmentally delayed, I just hope that the epilepsy won't cause him to be extremely delayed.
I appreciate your feedback.

I have had myoclonic epilepsy for 10 yrs. They found mine at 14. The earlier people get it, the better chance they have to grow out of it! So, you may be lucky. They caught mine too late. Im hoping since my son was diagnosed at 3 months, he'll outgow it>maybe. As for developmental delays: he was 5 wks early, so most of that maybe related to him being premature, but I noticed he was delayed in rolling over, head control, following objects, etc. But thank God he has finally caught up. Hang in there!

My daughter was diagnosed at about 11mths with Myoclonic Epilepsy, She is now 30mths old and is on 7mg of epilum morning and night. She only seems to suffer the myoclonic jerks when she has an illness of develops a fever. I am worried that the level of epilum she is on may be delaying her developmentally but doctors don't know for sure. Good luck and I hope all goes well for you.

Hi,

I have myoclonic seizures in my mix of seizure types.

It isn't fun.

I am not sure if they said that your son being as young as he is, has something referred to as infantile spasms, but it is the same thing in adults, and doesn't go away. It is a life-time seizure disorder.

"Myo" means muscle and "clonic" means jerk. They are sudden abrupt and sometimes forceful jerks of muslce groups.

A hand might suddenly fling out, a shoulder shrug, or a foot kick.

Occasionally the entire body may jerk.

Myoclonic seizures may take many different forms. They arise from, or at least the "jerk" arises from deep structures in the brain stem that control posture and tone in the body.

An abrupt increase in tone in a muscle group will cause a sudden movement of that part of the body. An abrupt increase in tone the flexor muscles will cause the body to bend forward at the waist, the head to drop down to the chest, the arms to bend at the elbows, or the knees to come to the chest. Any or all of these movements may occur during a myoclonic seizure. If they occur when a person is standing the will be suddenly and forcefully thrown to the ground either forward or backward hitting their face and breaking teeth adn doing other kinds of damage, or causing cranial damage to the back of the skull. Another form or variant of a myoclinic seizure or jerk is arching of the back, extending the legs straight, and the arms will stiffen.

Myoclonic seizures are SERIOUS because they are DIFFICULT to control and because they are often only ONE manifestation of a mixed seizure disorder with more than one type of seizure or with mental retardation.

On rare occasions infants or small children will develop a series of jerks that occur from as few as 3 times a day to several hundred times, called Infantile spasms, a severe form of epilepsy.

Age of on-set is between 2-12 months.

You will need to watch for signs of abnormal development, because this usually occurs with infantile spasms. Treatment is different for myoclonic seizures alone and not labeled as this.

Nancy